Our Clinical Advisory Panel gathered recently to discuss advice and information on the new Covid-19 vaccines for people affected by genetic haemochromatosis.

At present, there are two Covid-19 vaccines approved for use in the UK; one from AstraZeneca/University of Oxford and the other from Pfizer/BioNTech. Both vaccines have been rigorously tested. Although there have not as yet been any specific medical trials focussed on Covid-19 vaccines in people with genetic haemochromatosis, they are believed to be safe based upon the results from over 75,000 vaccine trial participants from the two vaccine trials.

Our charity welcomes the rapid innovation and development of these vaccines. We look forward to their speedy deployment. 

Our Clinical Advisory Panel believe that :

  • the vaccines are safe for people with GH - there is no additional risk or contra-indication from the vaccines for people with GH
  • as a common-sense precaution, anyone who receives the vaccine should avoid venesection for 7 days after the jab, to ensure the vaccine has time to strengthen the immune system immediately after administration
  • people commonly experience a headache immediately after receiving vaccination, so it may be advisable to avoid being venesected in the days before a vaccination and ensure that on the day of vaccination you are well hydrated (water)

What should I do if I am offered a Covid-19 vaccine appointment?

Our charity encourages anyone offered one of the vaccines to take up the offer of vaccination, promptly. Covid-19 is a serious viral infection and the protection afforded by these vaccines may prevent serious ill-health or death. 

It is helpful to the NHS and the teams administering the vaccine if you bring along your NHS number when attending an appointment for the vaccine. This is a 10 digit number (formatted like this "XXX XXX XXXX") and can usually be found on letters from your GP or consultant and on the NHS App (if you have registered to use it). Bringing your NHS number to the appointment helps to speed up the administration process, enabling more people to receive the jab, quickly.

When will I receive an offer of vaccination?

The rollout of these vaccines is determined by the UK government, advised by the independent Joint Committee on Vaccination and Immunisation. As of 30th December 2020, the JCVI has advised that vaccines be offered on a priority basis to people based broadly upon :

  • their age (older people first, commencing with people over 65 years of age)

followed by 

  • people aged over 18 years of age with an existing serious underlying health issues (eg cancer, COPD, chronic liver or kidney disease, serious heart issues, serious mental health issues or diabetes). The full list of qualifying underlying conditions is listed here.

followed by

  • people at high risk of CV19 exposure and those delivering key public services

The prioritisation of vaccine delivery will likely change over time. We will try to keep this page updated in response to the latest JCVI advice.

What can I do if I have a question or am worried about Covid-19 and my genetic haemochromatosis?

We are here for you. Please contact our telephone or email advice and information lines or your locally pharmacy or GP surgery.

I want to help get the vaccines rolled out quickly - how can I get involved?

The vaccine rollout programme is a massive national undertaking. To be effective, it will require millions of people to be vaccinated in a short period of time. If you'd like to volunteer to help administer vaccines in your local community, the St John's Ambulance Service is working closely with the NHS to staff-up over 100 regional vaccination centres. There are many roles available, not just for vaccinators, but people to help with administration and guiding people through their jab. You can apply to get involved with St John's Ambulance Service as a volunteer here.

Haemochromatosis UK is also experiencing an increase in advice and information helpline calls. We are seeking further volunteers to assist people contacting our helplines. Full training is provided; all we ask is for a commitment of 3-6 hours per month. If you'd like to get involved or have questions about what is involves, check out our volunteering pages.

I have advanced liver disease, are the vaccines safe for me, too?

Yes. The British Society of Gastroenterology has published this information update, in collaboration with NHS Blood & Transplant. They recommend that patients with chronic liver disease, autoimmune hepatitis and those post-liver transplant should consider vaccination for Sars-CoV2 with any of the available vaccines. 

I am on the transplant list, am a living donor or have already received a transplant. Are these vaccines safe for me, too?

NHS Blood & Transplant have provided this detailed set of guidance for people who have had a ransplant, are waiting for a transplant and for living donors.